We have a date for Lilly's Gastrostomy tube. 29th june in the morning. One night stay. Going to be a long two days! How do i feel? Well i watched the this is my button dvd given to me by Novita, and i cried and cried, does that sum it up?
I am anxious for her to get it done, and for it to be all over. For her to have a normal face without tape. For her to have a normal routine once it is in. For her to be more willing to try things orally without the NGT in the way.
I am also terrified, although in my career as a nurse i have looked after many kids with PEGS, this is my kid with a PEG! I am also saddened because it feels more final, even though it is reversible i cannot see in the future far enough to see it being reversed :(
We saw the metabolic doctors again. They said we are nearing the end of the list of possible tests and as we get closer the chance of getting an answer is more remote. We said we are prepared for the fact that we may not get an answer and that that does happen, but my heart is not prepared , it never will be, it will never rest.
They want to do a skin and muscle biopsy while she is under the anaesthetic having her Gastrostomy inserted. This will test for mitochondrial disorders and NCL disorders of which there are 9. Thay think they are likley tpo be normal but they however need to rule it out. They have also taken blood to extract more DNA and sent to the USA to a special gene research lab for testing in the hope thry might find some rare thing in the genes that is not tested for here. That will take months.
Lilly has a chest infection at the moment and is on Antibiotics so we are on watch again. Luckily her seizures have been minimal, one to two a week if that, just brief staring ones. The phenobarb is down to two mls, and she is much more alert, rolling over, trying to sit up, responding more. Her leg muscles are still stiff and she needs physio to loosen them. We are starting swimming classes with Novita in a few months time. We have a bath lifter and giraffe chair now which is making things so much easier. We need to keep her back straight because she slouches and is getting a curved spine.
Life is becoming more normal, i don't cry every time i hold her now, only sometimes. I don't know if my heart will ever stop breaking over and over again. I am enjoying her smiles, her responsivness, her laughter and her personality. There is a chance that she will go backwards and i do not want to miss anything she does before that happens.
So we wait. Wait for the peg. Wait for more results. Wait to see how she develops.
wait..wait..wait...
Tuesday, April 12, 2011
Monday, February 28, 2011
Lilly Update 1
Hi, you may have noticed there has not been any blogs for a while..that is a good thing! It's because we took lilly home from hospital and luckily, praise the heavens she has not needed to go back! So here is where we are after nearly 3 months later....
Lilly had the rpt MRI of her brain in december, it showed delayed myelination ( the nerve coverings in the brain are not growing) and deterioration or grey matter. Loss of brain tissue and extra fluid around the brain. Not sure exactly what all that means other than there is a serious brain growth abnormality.
EEG, same as previous one so no new light there.
Chromosome 3 duplication ruled out as the cause as her dad has the same mutation and he is fine.
Bloods, metabolic tests etc so far all normal.
We have been weaning the medications and seeing a definate improvement in alertness and activity. The tegrotol, was 1st to go, followed by the peroxidine, then the keppra. On thursday we begin the 8 week process of weaning the phenobabr..GULP And then as planned she will only take the epilim.
She is rolling over on to her tummy now, gets stuck when she gets ther..lol so funny. She is lifting her head up more. Still unable to sit, and we have noticed a slight curvature in her spine due to her always slouching to the left. Novita ( disability support service) has supplied us with a giraffe chair which will help her sit in correct alignment.
she is grabbing at toys and things more and appears way more like a 6 month old now than a 3 month old..so i don't care what the MRI says i think she has potential!
She has had her 1st birthday and finally been christened, and she slept all through that! The docs think she might have an autosomal nerve disorder due to her "hibernation" like sleep, her temp, heart rate drops and she goes all pale and difficult to rouse. Some other mystery to add to the list.
Her VEP ( eye test) shows she can see, but dont know what or how much as there is a problem with the light receptors in the back of her eyes, which is likley to get worse over time, so she may not be able to see.
Awaiting more hearing tests, but we are sure her hearing is fine.
She is nasogastrically fed still, and since leaving hospital has been refusing anything orally, to the point that she screams if i try to put it in her mouth, so currently working on getting her to accept food/drink again. She still chokes/gags when i do manage to get some in.
She is on the waiting list for a gastrostomy tube, a tube that geos into the stomach through the tummy, for feeding, 6-8 weeks is the waiting list atm, as semi-urgent. Her feed regime changes on a weekly basis, so we just try hard to fit it in our routines etc.
Oh and i have a pole like in the hospital for her pump and feeds thanks to a dear friend :) Whose son passed last year from a similar problem as lilly's.
So there we are, still awaiting a diagnosis which may never come, knowing that it is a possibility our buba could get worse as she gets older, but no one really knows. Just focussing on the here and now, what she needs now, and what she can do know and has the potential to do!
Lilly had the rpt MRI of her brain in december, it showed delayed myelination ( the nerve coverings in the brain are not growing) and deterioration or grey matter. Loss of brain tissue and extra fluid around the brain. Not sure exactly what all that means other than there is a serious brain growth abnormality.
EEG, same as previous one so no new light there.
Chromosome 3 duplication ruled out as the cause as her dad has the same mutation and he is fine.
Bloods, metabolic tests etc so far all normal.
We have been weaning the medications and seeing a definate improvement in alertness and activity. The tegrotol, was 1st to go, followed by the peroxidine, then the keppra. On thursday we begin the 8 week process of weaning the phenobabr..GULP And then as planned she will only take the epilim.
She is rolling over on to her tummy now, gets stuck when she gets ther..lol so funny. She is lifting her head up more. Still unable to sit, and we have noticed a slight curvature in her spine due to her always slouching to the left. Novita ( disability support service) has supplied us with a giraffe chair which will help her sit in correct alignment.
she is grabbing at toys and things more and appears way more like a 6 month old now than a 3 month old..so i don't care what the MRI says i think she has potential!
She has had her 1st birthday and finally been christened, and she slept all through that! The docs think she might have an autosomal nerve disorder due to her "hibernation" like sleep, her temp, heart rate drops and she goes all pale and difficult to rouse. Some other mystery to add to the list.
Her VEP ( eye test) shows she can see, but dont know what or how much as there is a problem with the light receptors in the back of her eyes, which is likley to get worse over time, so she may not be able to see.
Awaiting more hearing tests, but we are sure her hearing is fine.
She is nasogastrically fed still, and since leaving hospital has been refusing anything orally, to the point that she screams if i try to put it in her mouth, so currently working on getting her to accept food/drink again. She still chokes/gags when i do manage to get some in.
She is on the waiting list for a gastrostomy tube, a tube that geos into the stomach through the tummy, for feeding, 6-8 weeks is the waiting list atm, as semi-urgent. Her feed regime changes on a weekly basis, so we just try hard to fit it in our routines etc.
Oh and i have a pole like in the hospital for her pump and feeds thanks to a dear friend :) Whose son passed last year from a similar problem as lilly's.
So there we are, still awaiting a diagnosis which may never come, knowing that it is a possibility our buba could get worse as she gets older, but no one really knows. Just focussing on the here and now, what she needs now, and what she can do know and has the potential to do!
Thursday, December 2, 2010
We are Home!
After a 6 week stay in hospital, we are finally home with our bubba girl! The phenobarb is working, she is barley having noticable seizures now, maybe 4 a day, just staring ones...sometimes even i cannot tell if she is doing it or not! I didn't notice any yesterday at all!
We are increasing the Epilim, and decreasing the tegretol. Plan is to eventually get her down to one medication instead of 5, so talking of stopping the phenobabr again at some point. The phenobarb is good, but it delays learning and literally shuts the brain off, so she cannot reach her full potential if on it long term.....:/
MRI and LP confirmed for the 10th december, blood levels on tuesday, Rpt EEg in january, And repeat hearing and eye tests in feb. Video swallow prob in next two weeks, and for a PH probe prior to a gastrostomy at some stage.
Still floating around in unknown land right now, it is obvious that she will need full time care, so not sure what to do about work at the moment. Hoping to still work 2 days a week and get a carer or something for when mum cannot look after her.
Other than that she is the happiest i've ever seen her, laughing and babbling away at her sisters, probably telling them all about her hospital adventures...wish i knew what she was saying..lol
Still getting used to her meds and feed regime, it is not as easy on the other side. I just want a pole to hang the pump on, or a longer line, or another nurse to hold this while i do that...lol bit different on the parent side, there are challenges to face in the home environment that are not an issue in hospital!
She has spiked a temp this afternoon :( and is very gurgly, not clearing heer secrtetions well, so we are on lilly watch now, Her Paediatrician Dr Smiley ( yes that is his name and nature believe it or not) isn't too concerned at the minute, but i have to call him tomorrow to let him know if she is any worse..prob a course of abs, hopefully will fix it..don't fancy a trip back to the hosp so soon!
Well, off to get festive and hang up the tree, hopefully missy behaves so i can do that and maybe she can stare at the pretty tree instead...lol
Special thanks to all those who have been great supports...you know who you all are!!!
We are increasing the Epilim, and decreasing the tegretol. Plan is to eventually get her down to one medication instead of 5, so talking of stopping the phenobabr again at some point. The phenobarb is good, but it delays learning and literally shuts the brain off, so she cannot reach her full potential if on it long term.....:/
MRI and LP confirmed for the 10th december, blood levels on tuesday, Rpt EEg in january, And repeat hearing and eye tests in feb. Video swallow prob in next two weeks, and for a PH probe prior to a gastrostomy at some stage.
Still floating around in unknown land right now, it is obvious that she will need full time care, so not sure what to do about work at the moment. Hoping to still work 2 days a week and get a carer or something for when mum cannot look after her.
Other than that she is the happiest i've ever seen her, laughing and babbling away at her sisters, probably telling them all about her hospital adventures...wish i knew what she was saying..lol
Still getting used to her meds and feed regime, it is not as easy on the other side. I just want a pole to hang the pump on, or a longer line, or another nurse to hold this while i do that...lol bit different on the parent side, there are challenges to face in the home environment that are not an issue in hospital!
She has spiked a temp this afternoon :( and is very gurgly, not clearing heer secrtetions well, so we are on lilly watch now, Her Paediatrician Dr Smiley ( yes that is his name and nature believe it or not) isn't too concerned at the minute, but i have to call him tomorrow to let him know if she is any worse..prob a course of abs, hopefully will fix it..don't fancy a trip back to the hosp so soon!
Well, off to get festive and hang up the tree, hopefully missy behaves so i can do that and maybe she can stare at the pretty tree instead...lol
Special thanks to all those who have been great supports...you know who you all are!!!
Sunday, November 21, 2010
Here We go again :(
Well, a lot has happened since my last post. Oh Boy, where to start?
First the doctors tell me thay can't stop the seizures completley..and i fall apart and put myself back together.
Then the Doctors tell me they want me to take my baby home, not quite the same as i brought her in..i fall apart again and put myself back together.
Than, Lilly has a really bad day...had 63 seizures, in a row, all day..constant seizures for 12 hours straight...they call this a Status Epilepticus...had to have three sedating infusions to stop them...which affected her breathing and it was totally the worst she has ever been! How can she get worse, when they are meant to be helping her...so fell apart again...still putting myself back together again...feel a bit like humpty dumpty!
It was due to them stopping the Phenobarbitone, apparently she needs that! So they have started it again..but it means thay have to have a re-look at her other meds.
Thankfully she is now doin great...but it is still early days...only day 2 since the infusion...tomorrow will be the telling day..if it holds or not...day three here we come!
First the doctors tell me thay can't stop the seizures completley..and i fall apart and put myself back together.
Then the Doctors tell me they want me to take my baby home, not quite the same as i brought her in..i fall apart again and put myself back together.
Than, Lilly has a really bad day...had 63 seizures, in a row, all day..constant seizures for 12 hours straight...they call this a Status Epilepticus...had to have three sedating infusions to stop them...which affected her breathing and it was totally the worst she has ever been! How can she get worse, when they are meant to be helping her...so fell apart again...still putting myself back together again...feel a bit like humpty dumpty!
It was due to them stopping the Phenobarbitone, apparently she needs that! So they have started it again..but it means thay have to have a re-look at her other meds.
Thankfully she is now doin great...but it is still early days...only day 2 since the infusion...tomorrow will be the telling day..if it holds or not...day three here we come!
Monday, November 15, 2010
Not giving up!
today qualified as the almost worst day of my life to date. Doctors told me that there is little chance that lilly will ever be "seizure Free" and will continue to have frequent seizures daily or "uncontrolled" seizures for quite a while. As she gets older and bigger the medications should become more effective cos babies metabolise the medication too fast for it to be effective enough in some cases.
Devastated...due to the seziures she cannot eat/drink properly so will have her formula in a tube down her nose for a while, but we can still offer her small amounts of puree. She needs suction to help clear her oral secretions cos her cough is ineffective due to the seizures.
My poor bubba cannot lead a normal life as long as this goes on...:( so sad for her.
What this means long-term is still unknown, we have to take baby steps and take it as it comes.
The plan is to set things in motion for lilly to come home in the next two weeks though!!!! We will need a lot of equipment, and supports in place, so it will take that long to organise it all. We can take her on day leave though :)
So it's a good day, cos she can come home soon...but we are not taking our bubba home as she was before we came in....i am grieving for the loss of lilly as she was...but have to love lilly as she is now even more!
Very emotional rollercoaster day.
Devastated...due to the seziures she cannot eat/drink properly so will have her formula in a tube down her nose for a while, but we can still offer her small amounts of puree. She needs suction to help clear her oral secretions cos her cough is ineffective due to the seizures.
My poor bubba cannot lead a normal life as long as this goes on...:( so sad for her.
What this means long-term is still unknown, we have to take baby steps and take it as it comes.
The plan is to set things in motion for lilly to come home in the next two weeks though!!!! We will need a lot of equipment, and supports in place, so it will take that long to organise it all. We can take her on day leave though :)
So it's a good day, cos she can come home soon...but we are not taking our bubba home as she was before we came in....i am grieving for the loss of lilly as she was...but have to love lilly as she is now even more!
Very emotional rollercoaster day.
Thursday, November 4, 2010
One step forwards, two steps back
title says it all really. Bubba has somehow caught yet another virus, and is literally drowning in her own mucous. Having, nebs, suction and chest physio to help clear it. Means that her MRI,etc is cancelled untill she gets over this one. Also having more seizures due to vomiting with coughing and losing medication??? or just cos she is sick.
Feels like we make progress and as soon as we start getting hopeful that we are getting somewhere something puts us right back to square one again :(
Don/t know how i keep coping...or if i can keep coping,,,crawling up in a ball in the corner looking good right about now!
But we press on, lilly needs us to keep it together and she doesn't know ant different.
i think we may have to start thinking about what changes to make in our lifestyle, looks like this is going to be ongoing and difficult to deal with.
Feels like we make progress and as soon as we start getting hopeful that we are getting somewhere something puts us right back to square one again :(
Don/t know how i keep coping...or if i can keep coping,,,crawling up in a ball in the corner looking good right about now!
But we press on, lilly needs us to keep it together and she doesn't know ant different.
i think we may have to start thinking about what changes to make in our lifestyle, looks like this is going to be ongoing and difficult to deal with.
Sunday, October 31, 2010
Rollercoaster
Day 18 now..i think???? Well the last week has been full of up days and down days. Some days she has been really great, only a few seizures and minor ones at that. Then the next day she has lots of big ones and has continued so since. Today is a down day :( Having lots of big ones today. But had a great day yesterday.
Waiting in anticipation for the doctor's round in the morning......
Waiting in anticipation for the doctor's round in the morning......
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